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Friday, November 1, 2013

Good morning friends. Unfortunately, with my previous post, I upset a patient of Dr Eric Holland. I had intended to expand on the lecture, but needed a rest, so here it is a couple of days late. In the meantime, before I explain, I want to say that I'm sorry for the times that I upset people. This blog is my place to vent, to share, to emote, to dream, and to live my life out loud. People don't have to agree with things that I say, they don't have to like me, but I'm going to write my perceptions, my truth, life how it feels from my point of view. I get a visceral reaction when I upset others. Maybe it's genetic, both of my parents were raised Catholic, perhaps the Catholic guilt that I've heard so much about is an innate river flowing through my veins. Or, perhaps, it's just the fact that I don't like to upset others. I want to please, and I hate hurting other people's feelings. Whatever it is, because we don't all have the same views, or experiences, our opinions differ. I know that not everyone likes me, and I know that I offend people sometimes with what I write. I also know that a lot of people think some of my choices have been absolutely nuts, stupid even. But, you know what, this life is mine, and I'm just trying to do the best that I can. I write things as I experience them, and that's all I can do. There have been times that I have not written what I feel about doctors, or people, or I have not named them, but I have since changed. These doctors make mind-blowing amounts of money, and get accolade after accolade. They have amazing amounts of prestige and power, but they're not perfect, and in my mind, they should not protected or immune to reviews. If I have a bad experience with a doctor, I'm going to say it, granted that doesn't mean they're bad people, or bad at their job. For the few people that choose to read this blog, I'm sure you're all discerning folks capable of reading my opinion/experience with a grain of salt.

Now, on to the meat of the lecture. Dr Holland's brain child, here in Seattle is a great idea. Just as a note, every time a hospital removes a brain tumor, they keep a portion in their possession, in their "tumor bank". They use it for their own research purposes. In fact, Dr Holland's team even has my tumor tissue (nine blocks saved in paraffin), from my first tumor resection at the UW. Dr Holland's team has tumor tissue from the banks of University of Washington, Children's Hospital, and Fred Hutchinson.

The idea is to run the DNA of each tumor, and put them into their database. Then, by cross-referencing the tumor's unique chromosomal abnormalities, mutations, etc., the hospital can see what cases work best with what treatments. It's a fabulous idea! So, if you come in with a brain tumor, and they remove it, when the pathology comes back, they'll have a database as a reference to pick the right treatment for the DNA of your tumor. What I DON'T like is that they are only recording information about surgery, radiation, and chemotherapy for each case. The tumor fighters that I know are not giving up and just going with standard of care (because it so rarely works). They are doing supplements, off label drugs, experimental drugs, synthetic vitamins in high doses, diet, immunotherapies, hyperthermia, novocure, and all kinds of other stuff. And guess what, these things all have an impact on your health and survival. They can extend our lives. All of the treatments that I just listed have been used in research studies or clinical trials. Each one only works for a portion of people, but that's true with all treatments - including radiation & chemo. My problem with Dr Holland's database, is that it's incomplete and misleading. One example, for the people with brain tumors taking Valcyte (after radiation & chemo), the majority will live much longer than if they only did radiation and chemo, but in the database, the extended life will be attributed to the standard of care, not Valcyte, because it wouldn't be entered into the database (as it's an off-label use, not a standard treatment option). To me, if your data is incomplete, your results are compromised, therefore invalid. My point is that to have an accurate database you have to include all of the variables. It's dangerous when people don't have accurate information to form decisions, especially with treatments, and survival.

Another problem with the database, Dr Holland did not know who would have access to it. He kind of giggled and said, "Well, wow. That's a good question. I don't know." How can he not know that? I would think that the answer to that question would have been in any normal business plan. You don't start asking for millions of dollars without discussing (even privately) who will get access to the final product. Either they don't want to be nailed down with their answer, or they're unsure. As a tumor fighter, I want to know that answer. Will I ever get access? And under what circumstance? Would I have to undergo their protocol?

I said that I would consider their care in a decade or half at the soonest. The reason is because Dr Holland specifically said that it would take about a minimum of 5 years to implement his database. So, in the meantime, unless a new treatment is approved by the FDA and they start to offer it at the Alvord center, I don't think they'll have anything new to offer me. I'm a fair-weather fan with my health care, I go to who's winning, who has the newest research, the newest treatments, the best survival outcomes, etc. From what I have experienced, Seattle isn't quite there for brain tumor treatments. Man will I love it if that changes, though. It would be glorious!

Let's see, what else did I brush over from that post...maybe the money comment? Money, money, money, want, want, want...there's no denying that cancer is expensive, and when I hear numbers it just makes me sick. Dr Holland said that the combined amounts of money brought in by MD Anderson, and Memorial Sloan-Kettering is 300 BILLION dollars a year. Wow. All that money, and even HE said that we haven't made a dent in survival rates from brain tumors since back in the 60's. And treatments haven't changed that much since the 60's. How can he not see that this system is broken? Sometimes I feel like we are trying to polish a turd.

Now, about Dr Holland, he is truly exceedingly dedicated, and very, very intelligent, and what I'm saying doesn't diminish the fact that he's saved (I'm guessing) several thousand lives. I just don't agree with part of his plan. I wish it was more encompassing. It's so close, and could do so much good. But if he doesn't adapt to include all of the other variables in the database, it will be misleading. For example, I'm going to be a dot and a reference on this database. They will use me for someone else's treatment in 5-10 years. It will show that I only had surgery. They will show that I'm still alive and healthy. However, I am doing all kinds of things to make that possible. When they talk to the new patient they might say, "Well, your tumor, based off of pathology, is the most similar to this one P19r087x (I just made that up - which is representing me). So we could just wait and see how things go." Then they'll say to that patient just as they did to me when I asked what I could do to not have the tumor come back, "Nothing, go out and enjoy your life." Me: "What about diet?" Them: "Honey, you eat whatever you want. Ice cream, just go for it." When I'm still alive in 10 years, I want other tumor fighters to know that it's because I made informed decisions, it was not luck (well, maybe some luck). People do not have to do any of the things that I'm doing, but if they're going to be using my case as an example for comparison, I want the patient to have the full picture. That way they can make their own choices on how to move forward.

Okay, that was the most exhausting post. I think my eyes are crossed, and my right hand is definitely numb, and pushing uselessness. Time to find the cat, lay down and read my fluffy novel under our faux fur blanket.

Afterthought: All I want to do is help brain tumor fighters have the opportunity to make informed decisions about their care, and their health. Sometimes that means I don't agree with doctors, or institutions, or techniques, or ideology, and sometimes that means that other brain tumor fighters don't agree with me. And that's okay. We all have to blaze our own paths. Either way, I feel honored to walk along side my brain tumor fighters. It's a heavy burden to carry, and I'm constantly amazed by all of your strength.

Jess, thanks for writing that post, exhausting as it was. It needed to be said. The off-label drugs, diet, supplements etc. make a difference as we know from research. It would be dangerously misleading to look at a database and learn that the only treatment you had was surgery. If we're going to have precise genetic knowledge of a tumor in a database, we need just as much precise knowledge as the compilers are capable of concerning how the tumor was treated. I know I'm just preaching to the converted here. Thanks for the post!

My doctor in NYC said that Burzynski basically uses phenylbutyrate which I can get by prescription (through my doctor) much cheaper than Burzynski's clinic. It's a tough one. He's also so incredibly expensive. It's definitely a great plan B or C, though. I certainly have not ruled it out! Even the clinic. I'll do whatever I need to do.

You are spot on Jessica. If anyone is upset about what they say then that is their position. Most all patients/clients of medicine have high expectations of their Drs. and that is a big standard for them to meet-but we do not push them to draw incomplete conclusiions -we all want as much data on the surface for accurate conclusions. If even one brand of vitamins is different then we want it on record so it may help someone else. That, to me is what adatabase and research means-total accountability-OK Dr. Holland, for all of us, even you Doc. i know you are trying to do your best, but all the patients are out there experiencing the results and they want good results. Like the Marines always say to each other-Semper Fi-that is a brotherhood that always goes the extra bootstep for their brotherhood. Cancer patients are also a unique, hard working brotherhood, too. Gotta love anyone with that kidn of fight. Go Jess, you are my hero.You might know me as aa-love you Kid.

You can't please all the people all the time! Hell I have to remember that sometimes people don't like me! I mean I can't believe it myself as I'm so loveable but hey ho! Just don't worry and get upset about it - your intentions were good and at no point malicious so ease up on yourself.

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I am so grateful for the GoFundMe account that our friends set up. They started it last fall, because I stopped my treatments because of lack of funds, and now, possibly because of my lapse, I have a brain surgery scheduled for March 3rd, Dan's birthday. We are hopeful that our neurosurgeon will be able to remove the majority of the three brain tumors. But having it be out of state, it's complicated financially, and we are very thankful for your donations, and your prayers!

Disclaimer

This blog is intended to be informational, and hopefully at times, educational. It represents solely my personal opinion. This blog and my opinion are not meant to be construed as professional medical advice for any specific person or patient or condition. Qualified and licensed healthcare professionals should be consulted before considering or using any therapeutic product or drugs discussed in this blog. Definitely work with doctors and specialists to find your own cocktail approach. Please don't take my word for anything, do your own research.

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